Pages

Thursday, September 29, 2011

There's still one more day
to tell your member of Congress: don't let the Super Committee cut
programs for children with special needs. Send your letter by TOMORROW!

We're only 4,381
messages away from our 10,000-letter goal! These are the programs that
will help children with disabilities learn, play, and grow – just like
every other child their age. Many of these programs are already
underfunded, but if they're cut entirely, vulnerable children will fall
further behind in school.

Tuesday, September 27, 2011

I am familiar with his limitations. In many ways, as Riley grows life has more challenges; for one reason, his muscles cannot support his growing body and continually meeting goals is not his reality.

So, yesterday being a rainy, dreary day here with lots on our schedule including an evening meeting for Riley to set through and have me feed him his dinner during presentation... I simply went through the motions and brought only the supplies I had to have, which being special needs means plenty of stuff must be on hand.

The camera was given passing thought but left behind. I have lugged it every riding lesson for months on end and did not plan on getting it wet for no reason. Riley has not sat well for a horseback riding picture in some time. Naples Equestrian Challenge is currently getting a good turn out on volunteers and once again this fall I had the pleasure of watching from ringside. Watching without my camera as Riley performed the best he has on a horse in the past year! Riley pushed with everything he had to sit up tall on Pick A Spot's back, he turned at the sound of his sidewalkers Rhonda and Deb, and laughed when they trotted and he responded over the low jump. Was it the cool weather? Was Riley simply pulling it all together? Did having a PT as his sidewalker (Deb usually circulates the ring) help him maneuver into place? Does in matter? Riley worked hard, he interacted, he had fun and I got to witness it.

Yes, my son can have really great days and I never know when they are coming. Carry that camera Mom!

No, I have no picture to share his hard work with you! Or to remind myself how hard Riley works and that he can still improve.

My little cell phone sits beside me. I am ready to take Riley's next emergency. I can handle them. What bothers me is that Riley is on his own. Will the person beside him during his moment of need comfort him? Will he feel safe or will he be frightened. Sending him off to school is a comfort for me. He enjoys it, I can tell. He returns smiling. Yet, he is alone. More alone than any of us can understand.

Below is an article found on www.sengifted.org. As I consider the education of both my special needs child and typically developing child, I am reminded to watch that both are being prepared for their future while enjoying their childhood. Their school education may be worlds apart but the goals are the same.

SENG’s vision is a world where gifted, talented, and creative
individuals are supported to build gratifying, meaningful lives and
contribute to the well-being of others.
How can parents best support their gifted, talented, and
creative children at the beginning of the school year? I offer three
suggestions.Teach Children Philosophies of Education
I suggest that parents discuss with their children the
purpose of education. Exposing young children to what great philosophers
have thought about education not only teaches children history,
philosophy, and education, but also helps them to create their own
educational goals—goals that may differ significantly from the goals of
other children.
When exploring what great philosophers have thought about education, children might notice three main purposes of education:

Education serves the purpose of preparing children for
adult life, including preparing them to support themselves as adults.
Accordingly, the United States Department of Education’s stated mission
is: “to promote student achievement and preparation for global
competitiveness by fostering educational excellence and ensuring equal
access.”

Some philosophers emphasize that education should
prepare children for good citizenship. Plato (circa 400 B.C.) and John
Locke (1632-1704) advocated virtue and good citizenship as the aims of
education. Plato wrote: “And we must remember further that we are
speaking of the education, not of a trainer, or of the captain of a
ship, but of a perfect citizen who knows how to rule and how to obey.”
Locke wrote: “Learning must be had, but in the second place, as
subservient only to greater qualities.”

Education also serves the purpose of providing children
with an enjoyable childhood worth living and remembering fondly. John
Dewey (1859-1952) felt strongly that education should respect childhood:
“[The best teachers] give the pupils something to do, not something to
learn; and the doing is of such a nature as to demand thinking or the
intentional noting of connections; learning naturally results.” Maria
Montessori (1870-1952) similarly advocated happy childhoods: “Education
is not something which the teacher does ... it is a natural process
which develops spontaneously in the human being.”

Once children understand the purposes of education, they have
tools to articulate whether, and how, their own educations meet those
purposes or might be tweaked to meet those purposes. Sometimes the only
tweaking necessary is a change of perspective—perhaps a child will
understand that even if school currently is not sufficiently rigorous in
the “heading to adult life” sense. Perhaps the child can find ways to
enjoy childhood until rigor appears or reappears. Or, better yet,
perhaps the child can find ways to introduce rigor into his or her own
education. Child-introduced rigor might include education that will lead
to employment and/or good citizenship in future years. Some children
spend time excelling in computer programming, gaining marketable skills
at a young age. Other children spend time volunteering in ways that make
a difference in the world, foster virtue in the child, and later
impress college admissions officers and employers.Explain the Necessity of Knowledge, Communion, and Expression
Another way that parents might support their gifted,
talented, and creative children at the beginning of the school year is
by reading P. Susan Jackson’s article "Bright Star - Black Sky: A
Phenomenological Study of Depression as a Window into the Psyche of the
Gifted Adolescent (see the end of this column for the online link). I
recommend that parents read the article first before deciding whether,
when, and how to share the article’s excellent insights with their
children.
In the article, Jackson explains that gifted teens have an
absolute need for knowledge of themselves and of physical and spiritual
phenomena, for strong emotional or spiritual communion with others, and
for expression of their emotions and feelings. Reading the article at
the beginning of each school year might help parents and children (if
sufficiently mature) to understand that beginning a school year is not a
simple matter; each school year presents new opportunities and
challenges for finding the knowledge, communion, and expression that
Jackson found critical to the lives of gifted teens.
During the first weeks of the school year, parents and
children can consider how the school year will affect all aspects of
each child’s life. Will the child have sufficient opportunities for
knowledge and for self-knowledge? Will the child have time at school or
elsewhere to interact with true peers, not just age-mates? Will the
child have time and methods to express emotions and feelings? Parents
and children should consider finding non-school times to fill whatever
gaps might exist in a given child’s school hours.Offer Social and Emotional Hints
Most parents understand that the acquisition of knowledge is a
small part of any school experience. Most teachers are keenly aware
that the school day involves not just knowledge, but also social times
and emotional events. In this last section, I offer three hints that
parents might offer their gifted, talented, and creative children at the
beginning of a new school year.
The first hint comes from Benjamin Franklin, who realized
that by asking someone a favor, you endear yourself to that person.
Counterintuitive, yes, but it works! I suggest that you and your child
research what’s known as the Benjamin Franklin Effect. Your child might
then decide to try out Franklin’s idea at school as a way to build
friendship and respect.
Another friendship-building hint that I have shared over the
years with new students is to look around the room and find students who
look lonely. Then, with a smile on your face, go up to each of those
children, ask them about themselves, and listen well. Smiling is a
fantastic way to gain friends. Helping others who look lonely is an
excellent way to exhibit and to build a generous spirit. Asking people
about themselves and listening carefully to their answers is a social
skill that even many adults could improve.
Sometimes a gifted, talented, and creative child will spend a
school year without true peers in school. When this happens, parents
can share yet another hint—encourage the child to approach the school
year with the lens of an anthropologist.
Yes, that’s right—teach the child about the field of
anthropology and engage the child in studying the culture of the school.
Learning about anthropology and applying an anthropological lens, at
the child's level of understanding, to the school experience will help
the gifted child learn about and reflect a great deal on people, social
structures, and child development. Parents who spend the time necessary
to guide their budding anthropologist will benefit from increased and
honest communication that might lead to better understanding of the
child’s school experience.Conclusion
For more hints and suggestions, I recommend the book A
Parent's Guide to Gifted Children (Great Potential Press, 2007). That
book, which is the core of the SENG Model Parenting Groups, well
explains the nature and nurture of gifted, talented, and creative
children.
If there is a SENG Model Parenting Group starting in your
area, I highly recommend that you join the group. If no groups are
currently available in your area, I recommend you consider being trained
as a SENG facilitator. The next SENG Model Parenting Group Facilitator
Training will be October 7-8, 2011, in Charlotte, North Carolina.Wenda Sheard, J.D., Ph.D. is an emeritus board member and
past president of SENG. She currently teaches near London, England, and
serves as a trustee on the Council of Management of the UK's National
Association for Gifted Children.References

Monday, September 19, 2011

5:00 am From his hospital bed I hear the familiar intake of breath as a muscle spasm begins. Switching on the light I discover Riley in a clonic seizure. Grabbing him up, talking to him, massaging his limbs; the seizure subsides in moments. Four years ago, this episode could have lasted for hours. Now with all the anti-seizure drugs he is often able to cease without intervention.

5:02 am On with the day. After rearranging him repeatedly throughout the night, this meant falling back to sleep and oversleeping. John and Ronan always rise by 5:40 am. Oddly, they oversleep as well. This is very strange. I cannot explain Ronan oversleeping. John however has been working non-stop and just started trying Valerian Root Tea to help with his insomnia: it appears to actually work.

8:00 am Riley is off on the bus with a new assistant, Antonetta. Assistant Liz had to cut back on her hours; we are very disappointed. John and Ronan have already headed in their separate directions.

8:05 Plan for my day: dishes and laundry, desperately needed class at the gym, paperwork, sell some Arbonne, collect Riley from school by 2 pm, Integrity Biofeedback appointment for Riley and myself, pick up Ronan, oh - did I get Riley back into Dr. Stohler's chiropractor routine, riding by 5 pm (we missed last week), is the shower set up for Riley, do I have everything Ronan will need for homework at the barn, are tomorrow's appointments set up, is dinner planned for the late return.... then start it all over again.

8:40 am Heading somewhere in the vicinity of Old 41 and E. Terry. How do I handle this now. Seizure's are part of our life. Riley has quite a lot of drugs in his system to manage this disorder. The last neurology appointment, I was instructed to administer Diastat after the next cluster seizure - this must qualify. However, that window has come and gone. Riley is ready to go on with his day. Stimulation is better for him than coddling him. Yet, Riley is a "hot potato." Everyone who gets him in their arms tosses him back to mom or dad as quickly as possible. Do I just take him home to humor everyone else? No thank you. Riley needs to live a life. I need to get a life. On the way I talk to school's nursing office: I love that office, let him have his day - what do ya'll think the big green frog backpack hanging from the wheelchair full of Diastat and medical and contact information is for! (no one touched it by the way)

9:00 am I have found them, bus, EMS, ambulance. Screeching the jeep into a tiny little used car lot, I am there.

Camera in hand. Yes, I have my camera. These are the moments to record as far as I am concerned and I have missed plenty of them. EMS spies the crazy woman in ripped gym clothes, uncombed hair, red backpack purse and camera slung around the neck climbing aboard the bus.

I am greeted by a concerned driver, Louis... he spoke at least 20 words this morning, he must have been really nervous. Welcome to bus 27126 Antonetta! And then three rather serious EMS technicians. Loosen up guys, perhaps you've encountered seizure disorders before. Then of course Riley, still seated in his chair is smiling, laughing, and kicking - just like the last time I tracked down the bus and ambulance. Good times.

9:10 am.
Sign some papers.
Kisses for Riley.
Big "Hi" for the little girl across the aisle tugging on my arm. "Hi" again. Yes, "Hi, Sweetheart."
Merry waves from the boy ahead in the bus for the men in uniform.
Riley laughs.
Uniformed man stands up straighter and pulls in his chin.
Ambulance drives away.
"HI!"
BIG WAVE!
More seriousness... more laughs.
On your way please school bus #27126.
Oh yeah, swing by the pharmacy for Leviteracetam. Say yes to drugs.
Where was my day going? Seize your day, Stace!

Sunday, September 18, 2011

The fundraiser Friday at Chico's The Company Store for Naples Equestrian Challenge was a great success! I gathered my carpoolers and arrived a few minutes after 4 pm to discover the warehouse hopping. Our participants were serious shoppers. By the end of our allotted time the check-out line snaked back around the clothing racks and everyone had armloads of loot.

I am so excited to discover the results and want to hear everyone's experience. Thank you Chico's!

Heartbreak

Three years ago Ronan entered Bobbi Noonan'sVPK. As the year went on, one of the other Dad's, Don, and I set up regular playdates for the boys to give each other some child free afternoons. Ronan and Ethan became inseparable and adored each other from the start, even asking for sleep overs.

SWFL has been particularly hard hit by the economy and Ethan's parents have decided to relocate to Florida's east coast where businesses are significantly busier and his mom has already found a great new position as interior decorator extraordinaire. We are all so happy for the family for making so many positive changes in their life! We will miss them dreadfully, however. Ronan has taken his loss very hard.

"Can we move to Fort Lauderdale too?" he asked through tears last week.

"No, for now we will stay here but you will still be friends." I tried to comfort him.

"But, I love him!" Now I was heartbroken as well.

Friends forever pose with their teacher, the beautiful Miss Lauren.

Always the sweetest and most considerate child I have ever met outside of my own. Ethan considers Riley his next best buddy. Riley has a friend! And he's leaving...
Ronan sobbed all the way to school that morning, heartbroken.

We will still have playdates! Better gas up the car.

Early Thursday morning after the last sleep over Ethan heads out the door to Fort Lauderdale with his new lion webkinz, "Mr. Ronan."

Late that evening a picture came through my cell from the amazing Ms. Maija. Ms. Maija is Riley's other friend forever as well. Ethan held his new buddy tight and hasn't let go since.

Saturday, September 17, 2011

Remember today is International Coastal Cleanup Day! Get to a cleanup site near you if possible this morning, you may need a shower afterward but you will feel great for being part of it. Unfortunately, Riley's cold persists so we will have to clean up on our own another day... I promise.

Wednesday, September 14, 2011

http://blog.friendshipcircle.org/2011/09/14/11-special-needs-novels-that-will-touch-your-heart/Overfilled
is how I feel emotionally and timewise.
There just is not enough of me
to get to everything I want to do.

Riley's
cold from Labor Day weekend just cannot be shaken. Poor little thing
really needs to get a good clean breathe. This week he has been sent
home from school and lost out on horseback riding. PT was "messy" but
he got through it. Good thing we've got drugs:-) But they wear him out
too.

Great big thank you to all who have signed up for Friday's event at Chico's! If you don't hear from me personally to remind you (big oops if you don't), please contact me.

Sharing today because that's what I do and I just can't help myself

I have taken to devoting one post at the end of each month to share the very many special needs blog posts which speak to me... this one will not wait because she speaks to my today where my head is:The Irritating Factor

Friday, September 9, 2011

Riley and I had the pleasure of being interviewed yesterday by Stacey Deffenbaugh! Stacey anchors NBC-2 News at Noon and The Healthcast report at 5:30pm.
She also contributes court stories from state and federal court.

Ms.
Deffenbaugh and her cameraman, John, were a pleasure to have in our
home and share Riley's story as well as his cause of protecting vulnerable
children against respiratory illness. Fortunately, Ms. Deffenbaugh was
incredibly patient with my random thought pattern and our slightly chaotic lifestyle. This experience
certainly shows me that I need to polish my speaking skills and reign in
my focus. I suspect however that she will have no problem working
around us as she prepares to get the word out.

RSV disease usually causes moderate-to-severe cold symptoms. However, for some babies, complications from RSV disease can lead to serious lung infection.

Babies at most risk for developing severe RSV disease are premature babies - those born before 36 weeks gestation.

Premature babies have underdeveloped lungs and fewer of the vital antibodies needed to stave off infections, so they are not so well-equipped to fight RSV as full-term babies. Other risk factors for RSV include: low-birth weight (under 5.5 pounds), certain lung and heart diseases, and situational risk factors such as attending day care, having preschool or school-age siblings, or exposure to tobacco smoke.

It is recommended that you call your baby's doctor if your baby has any of these problems:

Coughing or wheezing that doesn't stop

Fast wheezing or gasping for breath

Spread out nostrils and/or caved in chest when trying to breathe

A bluish color around the mouth or fingernails

A fever (in infants under 3 months of age, a fever greater than 100.4 degrees rectal)

Prevention

Cover coughs and sneezes

Wash hands frequently and correctly with soap
and water for 15–20 seconds

No matter how formal or informal the baby shower is, you
still need to bring baby
gifts to the future mom. Choosing a great gift for a baby shower is a
matter of knowing the mom well and of getting something thoughtful, personal
and useful. Here are our top 10 baby shower gift choices.

Children’s books

There’s nothing more wonderful for a baby than to grow up
being read stories to. It opens up the imagination and it helps develop
listening and eventually reading abilities. If you are literary-minded, getting
children’s books is a great gift.

Baby shoes

Babies’ feet grow super fast and they will need a constant
supply of baby shoes. Some great designers like PediPed are making practical
AND fashionable shoes for babies. You can’t just buy one pair!

Baby tub

Baths are too big for babies, and toddlers quickly grow out
the kitchen sink (ew!). So why not give a customizable baby tub that will last
until your baby’s big enough for the bath? And it’s hygienic, too!

Bouncy seat

The classic bouncy seat is always a great choice if you’re
not really sure about what to get the new parents. Bouncy seats keep baby safe
and occupied while mom and dad go around preparing dinner or cleaning the
house. Choose one with colourful, interesting activities.

Baby sling or carrier

Baby slings are hot these days, with celebrity and ordinary
moms alike using them. It’s not only practical for mom and dad, but also
fashionable (some great fabrics out there) and it helps strengthen the
parent-infant bond through close body contact. We love them!

Baby sleeping bag

Blankets can be dangerous to babies if they get it around
their necks, so baby companies like Halo have come up with armless sleeping
bags to keep your baby cozy and safe at night. Be original by choosing funky
colors!

Travel kit

Everyone knows a parent who forgot something at home while
out with baby. With a baby travel kit, this won’t happen again: a diaper bag,
some diapers, extra clothes, a bottle and some baby formula, small toys and
cleaning wipes are all you really need.

Play mat

Like the bouncing seat, the play mat is a great way to keep
baby busy. Choose one that will last for a while through many different
activities that will gradually interest baby as it grows up.

Nursing pillow

The nursing pillow is kind of new in the baby care
landscape, but it’s definitely a relief for mom’s tired arms. Fits in any lap,
keeps baby stable while mom feeds him and it comes in various styles and
colors. A welcome addition to any new mom’s kit.

Car seat

A staple of any baby shower, the car seat is definitely a
must. Choose from a reputable company that produces safe and sturdy seats like
Graco.

There are many other gifts available: a gift card for baby clothes,
hand-knitted booties or hats… Just use your imagination and you’ll give a great
gift!

Tuesday, September 6, 2011

(I,
John Buck, being of relatively sound
mind (yeah, who am I kidding) take credit for this contribution.

THE NAUGHTY NURSE: Yeah after a kid with a disability, the whole
nurse/doctor role-playing thing will never be the same. Instead she is the b*tch who critiques you on how you handle being a
parent and not making the mark. Unlike a
spouse who will never criticize you for not making the mark :)... esp. when s/he is overtired, stressed and
covered in XX (fill in the blank but it always originates with Riley).

LOTS OF MOANING:
With a disabled child in the bed 7 feet away you will constantly hear moaning
during "the moment"... move to another room and the baby monitor will
provide the background "music."
The best part is when the diaper gets really full, you are "in the
moment"/almost at the end and there is a huge giggle/laughter in the
background. Nothing says romance like
laughter in the background.

A THREESOME :
frequent breaks "in-between" to put a pacifier back in the mouth;
change a diaper or lift a drooping head.
Trust me, a threesome is TOTALLY OVERRATED.

BEING CATHOLIC: yeah with a disabled kid you don't get that
much and probably every 2 months you get your virginity card back. One more card and I can apply for
canonization.

THE CRYING SCREAM: Back molars are coming in and no matter what
you do, cries of pain come out. The
cries are nothing like the people in "the movies." Even "the Hedge Hog" would have
backed away from that one. But, when you
are the parents of a disabled child, you plow though! Take your chances/"Embrace" the
moment (and for those of you who do know get the joke/ Do not Google
"hedge hog movies adult."

A THOUSAND AND TWO
USES FOR A BURP CLOTH: Yeah, we are
trying to keep this blog PG-13. You fill
in the blank. (Legal claimer: Any profit made for using the burp cloth in
this way will be forward to >>>> :)

COULD HAVE BEEN TWINS: My FAVORITE story... Ronan was conceived while my mother-in-law
watched Riley for 30 minutes.
Considering it took 10 minutes to get to the room. Ten minutes to get back. Five minutes to remember what the hell we
were doing. We had 5 minutes to
enjoy. His joke: Had we had 10 minutes it could have been
twins!

I SHAVED FOR THIS?: When you have a disabled kid you will be
happy that they just showered (in the past 3 days).

YOU'RE DONE ALREADY?: As a supportive/contributing husband, I took
7 minutes and wrote the above. When I
told Stacie I was finished. She replied
"you are done already?" Again,
it is amazing what you can/will/DO accomplish with a disabled child! Even without a disabled child, in the context
of this blog, it still fits!

Sunday, September 4, 2011

The boys and I are on our own again this morning. John is working yet another Sunday and sees this Sunday morning only project going through next summer. I am missing my husband and the boys definitely miss their Dad. Ronan is being a very understanding six year old. He rose as usual before 6 am, got out of bed on his own, dressed and came downstairs and entertained himself (or rather cared for his herd) on Webkinz allowing me to focus on Riley.

Have a safe and wonderful Labor Day Weekend.

Stacie

If you stumble by my post today - Please link up with me at the sites below

Each
month, White House staff who work on disability-related policies host a
public, live-captioned conference call to keep the public better
informed about important developments on many different disability issues.
These calls also connect you to leaders in the federal government who
work on these issues. Over the past several months, monthly conference
calls have featured discussions on accessibility, employment, education,
technology, emergency preparedness, transportation, healthcare and the
federal budget.
The White House is now offering the opportunity for you to suggest topics you'd like discussed during these calls. Send
in your ideas about subjects for discussion, as well as the federal
officials you'd like to hear from on these subjects, by visiting https://www.disability.gov/WHQuestion.

Friday, September 2, 2011

Hope you enjoy the video's and gallery. Riley and I are taking a sick
day. No worries, his temp is back down and he's already back to
enjoying his food. Stacie

The Forget Me Not Gallery is a favorite visit for me each Friday. Please check it out.

The Best Way Out is Always Through Movie: The Power of Perseverance! We all have doubts, fears and dissappointments in our lives. During those times, we look for shots of inspiration and encouragement to get us through. That's what this little movie is all about!